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People with ME have many symptoms including fatigue, muscle weakness and pain, unrefreshing sleep, cognitive difficulties, orthostatic intolerance, and a range of other neurological problems. These symptoms can be mild or severe, and can come on suddenly or slowly over days or even weeks or months. ME affects men and women of all ages and racial and ethnic backgrounds, although it is more common in women than men. It can cause work and social problems for adults and can lead to children being unable to attend school or needing around the clock care.
Many people with ME are unable to work, and those who do may often have trouble finding suitable jobs. This can also mean that they have fewer opportunities to get a social life and develop friendships, leading to isolation. People with ME can also find it difficult to live alone because of the need for around the clock care. In some cases, ME can be so severe that people are bedbound or housebound and need to have help with eating, drinking, washing and moving around. The good news is that the condition can be treated with a combination of medications, therapies and support groups.
There is still no cure for ME but there is a great deal of research ongoing to find out more about the illness and to develop effective treatments. It is important that medical professionals and the general public understand the difference between myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). ME is a specific neuromuscular disease with distinctive features. CFS, an ill-defined fatigue syndrome, has pushed ME into the background.
The tentative definition of ME that we have proposed in this article deviates from the London criteria [32] on two crucial points. The first criterion of the London criteria requires that exercise-induced fatigue be present, which is not what was described as a characteristic feature of ME in the literature, and the second criterion of the London criteria specifies “malaise” rather than the distinct symptom of muscle fatigability/long-lasting post-exertional muscle weakness which is a discriminative feature of ME.
The research we have done so far shows that ME is a serious illness which requires urgent investigation, but the most recent medical literature indicates that a diagnosis of ME is not easy to obtain. Consequently, many patients do not receive a correct diagnosis and as many as 90 percent of ME patients are either misdiagnosed or are told that they are not sick at all. This is unacceptable. An operationally defined ME case definition is indispensable for unraveling the aetiology and pathophysiology of ME.